Glad to have found this place!

[Skyward]

Hi Everyone! I had a little trouble getting registered and logged in- so I couldn't post- Thanks for helping me get it sorted out Tex! I spent the past 2 days reading many of the posts (and various linked articles) and I wanted to reply on so many threads with questions or shared experiences... maybe if I spent the next weeks catching up on all that- I wouldn't have to worry about how to get through the holidays.

I'm in a bit of a state of shock, don't feel like I'm really my normal self to be introducing myself to people- especially to step right out front with stories of my silent suffering that even my best friends are barely aware of.

I'm a 45 year old mother of 4. I have been struggling with D for 5 years, ever since my youngest child was born. There were a few other times in my life that I had trouble with it- but not going on and on like this.

I have been let down over and over and over by the medical system/some practioners, and as I'm reading here, and learning some things, and connecting dots- my *shock* is deepening because it seems that when I did ever go for help with things- not only was I not getting helped- I often was being given the OPPOSITE of what was going to good for me or going to take me toward healing- and often was actually harmful. It's sinking in just how deep and far back this goes.

I was finally diagnosed with CC (and this also has a headdesk story of incompetence to go along with it)

So... at least a reason- finally I know at least a name.

I was prescribed Budesonide. (3 3mg capsules 1x a day) A miracle drug for me... sort of.

It worked almost instantly. Such a change- so much hope- a ray of sunshine!!! after five years- the very first day I had one bm in the morning and then no more the whole rest of the day... till the next morning- one more (not normal- but just ONCE) I could not get over the change- I did not expect it to work so quickly or so well- I was so amazed and so hopeful.

And then- (cue dramatic music)

I had a terrible reaction to the budesonide about 48 hours after I began taking it. A really bad and apparently "rare" reaction. (where should I stick that budesonide reaction post?) So I can't take it anymore. That's it.


The good news? I am- so far... still experiencing the good part of the budesonide. Every day since 11/12 I have had one, non-urgent... but politely insistent BM in the morning. Still not normal- but just one trip to the bathroom to poop. I actually have to get up and make trips to the bathroom during the day to pee!!! I have not had to make a trip to the bathroom to pee in YEARS (twofold- dehydration in general had me peeing less... and the frequency of having D made sure that I was already there- so no need for a special trip.) When the colloquial #2 was ALWAYS screaming "ME FIRST" at #1... It is so nice to just take a piss!!! I can only hope that there is someone here who can say "Amen Sister! I hear you speaking the truth!"

So now- I'm just scared- not knowing if my freaky D train just got derailed by Budesonide or if it's a matter of days or hours before residuals wear off, sensitivities kick in and this amazing two week vacation is over and my passport is revoked to never ever be able to go back. And of course- this is Thanksgiving week. HAHAHAHAHAH I'm hearing you! like... Seriously!?

( FYI: I am perfectly fine going to dinner dressed like Hannibal Lecter. )

Wrapping up this introduction (did I really just introduce myself to total strangers like this!?) With the thought that I am increasingly convinced that my problem is in large part a histamine sensitivity (something I never heard of till 2 days ago) and that so many of my long and varied list of ailments seems to point to that- I am starting a histamine restriction diet right now. A little curious if anyone has had any success with the Histamine restrictions WITHOUT the gluten ones. I really don't think that Gluten is my issue. (and tested celiac -)

With much love- Sarah

(I had to edit that post because it got garbled- hopefully I got it right)

[tex]

Hi Sarah,

Welcome to our internet family. And thank you for such an entertaining post. With this disease sometimes we have to laugh in order to keep from crying, so we certainly understand and appreciate your humor.

Time will tell whether or not you actually have any food sensitivities (other than high-histamine foods). In some cases the effects of budesonide can last as long as up to 8 weeks, though most relapses occur typically within a few weeks after ending the treatment.

It's not impossible that you may not have any food sensitivities, it's just not very likely, but let's hope that you are one of the uncommon exceptions. With such a long history of occasional symptoms, it's very likely that you are sensitive to gluten, even though you may not have classic, fully-developed celiac disease. It's estimated that only about 5 % of celiac cases are ever diagnosed, due to the poor sensitivity of the blood tests used by doctors to screen for the disease, and since most doctors refuse to recognize the validity of the stool tests offered by EntroLab, they have no test at all, for detecting non-celiac gluten sensitivity. All of us here (except for a few who have been diagnosed with celiac disease) also show a negative result to the classic celiac blood tests, but we are at least as sensitive to gluten as the average celiac.

Again, welcome aboard, and please feel free to ask anything.

Love,
Tex

[TXBrenda]

My brother was diagnosed as a celiac several years ago. He could not tolerate Budesonide. It made his heart beat too fast. He is now in remission. I never took it because I tried the GF diet and it took care of my symptoms. The biopsies from my last colonoscopy in 2008 were negative for MC. I was diagnosed in 2003 with MC and Budesonide may not have been available then.

Sorry you had to find this group but welcome. Feel free to ask anything. Tex probably has the answer or knows where to find the answer.

[Skyward]

Thank you for the welcome Tex and Brenda.

Brenda- I did not know that remission could develop to the point that a biopsy would return clear. That is interesting.

I'm afraid that I have permanent damage, but time will tell I guess. I go back in 5 years for another colonoscopy.

[dfpowell]

Brenda,

Did you have lymphocytic or collagenous colitis?
I am wondering if there is a difference in achieving remission if you have LC or CC? Maybe Tex would know.

Thanks,

[Leah]

Welcome Sarah. You had me giggling while reading your post. And yes, many of us would be saying "Amen Sister!"

I am three years post Dx. and luckily found this forum right away. Being in the health/nutrition field myself, the diet was probably easier for me to figure out then some. I didn't think that gluten bothered me either, so at first I only eliminated dairy and caffeine. I was put on Budesonide also and also was better right away. Fortunately, I was able to stay on it and slowly wean the dose down over 6 months. During that time, I got serious with the diet and also took out gluten and then later soy. On top of that, I also eliminated all high fiber foods ( no raw fruits and veggies, beans, legumes). I stuck to a pretty high protein diet ( meats, fish , and eggs) with a few cooked veggies, white rice, corn tortillas and chips, GF chex cereals with almond milk, and almonds and cashews. It was difficult, but i was so determined to let my gut heal and to never have to take corticosteroids again. After six months and off the drugs, I started testing foods back in one at a time. I remain gluten, dairy , and soy free, but have been able to add most foods back in since. This process takes time.

I also know that histamines are an issue for me. I found this out by taking an OTC antihistamine ( Allegra) when my stools were still soft. Low and behold…solid! Day after day. There was my answer. It's all very complicated and I'm sure you will figure it all out.

If you want to know for sure whether you are producing too many IgA antibodies to certain foods, look into Enterolab tests. They are not cheap, but it can save you a lot of guess work.

OK keep us posted on your progress. Have a great holiday ( no stuffing for me!)
Leah

[UkuleleLady]

Hi Sarah,

I'm glad you found us. 5 years is such a long time to be suffering from this disease. I pray that the budesonide you took continues to give you some relief. There is a silver lining in that some people have gotten better just by addressing their food intolerances (without meds). Mainly, through cutting out gluten, dairy and soy completely, and sometimes in addition: eggs, various meats, fibrous foods, fruits, etc.

Each case is pretty individual...but gluten, dairy and soy seem to be the most common offenders. It may seem daunting to eliminate them but I have removed these items as well as a ton of other things and I enjoy my life D-free and for the most part, drug free. I can eat fruit and vegetables again, in moderation. I enjoy diverse proteins and dark chocolate for a treat. Life is good, I'm happy and healthy for the most part. Thanks to this place.

Keep looking around and feel free to ask any question you want, we all try to be helpful and at the very least brainstorm and offer support when all else fails.

Best,
Nancy

[Skyward]

Nancy- I'm so wrapped up, or focused ... amazed- stunned right now on the thought that a lot of these other symptoms I've had were caused by a major histamine malfunction in me. So I'm really wanting to do an extreme histamine reduction diet right now- it's so dramatic that it's also wheat free at the moment and pretty light on dairy compared to what my diet was like last week. I have purchased some allegra but haven't started on it yet. I printed out the foodlist and have it with me in my purse at all times since I'm trying to learn so much so fast and I'm also operating in bit of a mental fog.

I wish I could get a gluten free and histamine reduction diet overlay and see what's left.

I went to this GF website today and literally laughed out loud because their "help to get you started" 7 day meal plan was designed like it's goal was to eat as many high histamine foods as possible...right off that bat- day 1 Breakfast: Egg omelette with spinach tomato and cheese, GF toast and an orange.

http://celiac.org/live-gluten-free/7-da ... meal-plan/

Oh boy.

I don't know if this little move has made the rounds here, or if posting youtube links is even allowed- but I would love to share this with you guys here who have made me feel so comforted-

"RSA shorts: The power of empathy"

https://www.youtube.com/watch?v=1Evwgu3 ... ture=share

[TXBrenda]

I was diagnosed with LC.

[tex]

Hi Donna,

I'm not aware of any research that would shed any light on the answer to your question. One would think that LC would allow faster healing, than CC, because CC involves thickening of the collagen bands in the walls of the intestines, whereas LC only involves an increase in the T-cell population. But since it's known that MC can segue from one form to the other (from LC to CC, and vice versa), that suggests that the relationship is much more complex than meets the eye, and casts some doubt on whether it's possible to predict which one might heal faster, without a more sophisticated understanding of the mechanisms involved with each type.

MC is a very complex disease. I'm not sure that we know enough about it at this point to be able to answer that question. The biggest problem seems to be that there are such huge differences in the way that each of us respond to treatment, and there are so many differences in the details of our respective treatment programs. And of course age makes such a huge difference in healing time. All these details make it difficult to see the forest because of all the trees.

Still, I don't recall anyone who was originally diagnosed with CC ever posting that their most recent biopsy samples showed no evidence of MC. I've seen at least 2 or 3 such posts from members who were diagnosed with LC. This might be a coincidence, or it might be compelling evidence. Of course, one doesn't have to have biopsy-based proof of normal histology (complete healing) in order to be in remission. Obviously, many members here who have CC are now in remission, but I have no idea how long it took them (on the average), in comparison with members in remission who have LC.

Tex

[Deb]

Skyward, I loved the empathy video. Deb

[dfpowell]

Hi Tex,

I came across this research article, http://gut.bmj.com/content/36/6/880.full.pdf which suggests they did not see any changes in the diagnosis of LC and CC after a period of time.

I have been thinking of my own diagnosis which was originally LC, but when I went to Mayo they said it was CC. So I am thinking I have both LC and CC. I am wondering if your have collagen bands that are thickening, would it be like scar tissue and always be thick? Therefore, even if your other symptoms go into remission your may still have difficulty with absorption in the colon because of the collagen? Has anyone on this board with CC reported going back to normal completely?

Thanks for any thought you may have,

[tex]

Donna,

For some reason or other, my browser isn't having any luck loading that PDF. Maybe I'll be able to access it later.

Of course now I don't have any idea what the article actually says, but we have to remember that the official medical position on MC does not endorse diet changes to prevent inflammation from being regenerated. Therefore they have no way to end inflammation, they can only attempt to suppress it with anti-inflammatory medications.

Actually, based on the medical diagnostic criteria for the 2 types of MC, there is almost always lymphocytic infiltration present with CC, in addition to thickened collagen bands. Therefore since the presence of thickened collagen bands is definitive, whenever the collagen bands are thickened sufficiently to meet the diagnostic criteria for CC, the disease is called CC, regardless of the level of the lymphocyte (T-cell) population.

I really haven't paid much attention to reports of collagen band thickness returning to normal, but I do recall Joe mentioning some time ago that his collagen band thickness was approaching normal again.

Tex

[dfpowell]

Tex,

If you copy and paste the link then you should be able to open it.

The reason I am asking about collagen is, in the skin collagen prevents absorption and in the colon with CC it is also preventing absorption. I don't understand the pathology of how the collagen would break down once it is formed in the colon.


Thanks for your thoughts,

[tex]

Hi Donna,

I finally managed to open the article by using a different PDF viewer, rather than the default viewer for Firefox.

That's a rather old study on a limited number of patients, but aside from that, I don't see any clues in it that would relate to your question.

I see why you are asking that question, but despite similarities, there are very significant differences in the construction of the epithelia of the intestines and the epithelia of the skin. The skin is designed to allow perspiration to get out, and to prevent pathogens and other exogenous objects from getting into the body.

The skin is composed of the epidermis (at the surface), supported by the dermis beneath, and other layers of supportive tissue below that. The upper layers of the skin (that is, the layers that protect the body from the external environment, are quite different from the upper layers of the intestines (that protect the body from any toxic or pathogenic contents of the lumen). In the skin, the outermost layers of the epithelium (known as the epidermis) consists of stratified squamous (IOW, flattened) cells arranged in layers, that allow for layers to be worn off and replaced without adverse consequences for the layers below. About 90 to 95 % of the epidermis is composed of keratinocytes which serve as the body's primary barrier against the environment, by preventing pathogens from entering, and providing a natural barrier to infection.

Below that lies the dermis layer. The dermis consists primarily of connective tissue (collagen), and it provides a cushion to help protect the body from external stress and strain. In addition to collagen, the dermis contains elastic fibers, and a supportive matrix, and it houses all sorts of good things such as sweat glands, touch and heat receptors, hair follicles, blood vessels, and various other items.

But unlike the skin, the epithelium of the intestines is the top layer of the mucosa. And the rest of the mucosa consists of the lamina propria. The epithelium of the intestines is comprised of a single layer of vertically aligned cells known as enterocytes (this arrangement is exactly the opposite of the epidermis of the skin, which consists of multiple horizontal layers of cells). But the lamina propria is somewhat similar to the dermis, in that it too consists mostly of connective tissue (collagen).

The loose nature of the connective tissue in the lamina propria allows it to contain a wide variety of cells (such as fibroblasts, lymphocytes, macrophages, mast cells, and of course capillaries, to provide a way to supply nutrients from the lumen to the body.

Collagen is what holds the body together, and various types of cells are held in place and supported by a collagen matrix, to form organs, and collectively to form the entire body. And without this collagen matrix, our cells would just collapse in a heap on the floor. But CC introduces structural changes in the collagen bands which normally provide structural integrity in the lamina propria, causing them to thicken. But is this relevant to malabsorption? I have no idea how much, or even whether this adds to the malabsorption problem associated with MC, because the main cause of the malabsorption issue associated with MC is the same as with celiac disease — poor digestion and rapid transit. I have a hunch that as far as the malabsorption problem is concerned, collagen band thickness is a moot point, because due to the nature of the primary malabsorption issue, collagen bands would never have an opportunity to significantly influence absorption, even if they could.

And of course, except for the presumably rare condition known as collagenous sprue, celiac sprue is not considered to be associated with thickened collagen bands, even though malabsorption is a major issue (usually assumed to be due mostly to villus flattening).

At least this is how I see it. But of course, I could be all wet.

You're very welcome.

Tex